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    • #32484
      William Patterson
      Participant

      My wife’s pulmonary doctor is prescribing two new “designer” drugs that are supposed to reduce the blood pressure in the lungs by opening up the blood vessels.  One is called Adempas (riociguat). Adempas, among a class of drugs called soluble guanylate cyclase stimulators, relaxes the arteries.

      The other drug is Opsumit which does a similar thing like Adempas.  The bad thing with both of these drugs is that they cost thousands of dollars a month.  We are trying to get into a program with the manufacturer.

      My wife’s condition has occurred after having blood clots that reached her lungs from having afib.  She is on blood thinners but this condition now seems to be permanent.   She gets winded just going a short distance to the bathroom and has to wait until her heart stops hurting and she can catch her breath.  She is on constant oxygen too.

      Your thoughts.

    • #32487
      Jen Cueva
      Keymaster

      Hi @williampatterson, yes, these “designer” drugs that you are referring to, thankfully both have copay assistance programs. Is your wife seen at a PH center? If so, her PH nurse should have shared with her the information about copay assistance plans.

      I have been on both Opsumit and Adempas. Adempas, I stopped earlier this year; Opsumit was much longer. The programs from the drug manufacturer that you are awaiting should be those programs. I hope that she gets some assistance; most patients do. I know from firsthand how expensive these PH treatments are; no one is inexpensive, unfortunately. But they are worth it; I was diagnosed in 2005 and am still on oral medications.

      Because your wife has PH related to blood clots, I am guessing this is why they chose Adempas. Was she not a candidate for PTE surgery? I am sorry that she is having chest pain and increasing shortness of breath. Hopefully, she can get started on the new treatments and will see results soon. I know that although while multiple therapies are a plus, some PH doctors choose to begin one at a time to see which one is offering relief before adding another.

      Please keep us posted and let us know if you or your wife has any other questions or concerns. Has she only been on blood thinners and oxygen for 3 years?

    • #32489
      William Patterson
      Participant

      I am going to try my reply again.

      Wow, so good to hear back from someone in the same condition.  Sometimes we feel in the dark.  We have filled out the forms for assistance and the Doctor tells us we should not have to pay those high prices.  So let me ask,  Did the drugs work and open up the lungs so you can breathe better?   Have you experienced any side effects?

      • #32514
        Carol Volckmann
        Participant

        Hi William, help in copay for these extremely expensive drugs you can google Funding for chronic diseases. You need to check if their enrollment is open and do they cover PH. One is called Good Days another is The Assistace Fund. Wishing you and your wife the very best positive outcomes. This journey is a tough one but the outcomes of these new treatments adds quality and quality to your life. I was given 3-5 years when diagnosed that was 18 years ago and I am 77 and still forging ahead. Don’t lose faith.

         

         

    • #32490
      William Patterson
      Participant

      OK, my reply went through but only part of it.  I just reduced the number of words.  Is there a limit?  If so then it needs to show that.

      • #32492
        Jen Cueva
        Keymaster

        Hi @williampatterson, there are no word limits. This should not have been an issue. I can reach out to tech. Would you mind letting me know what the error message reads on your end?

        I responded via private message but am happy to respond here and share the entire post you planned. Is that OK with you?

    • #32502
      V.R. Peterson
      Participant

      @williampatterson, does your wife’s doctor suspect she has CTEPH (Chronic Thromboembolic Pulmonary Hypertension — or PH caused by old clots that have calcified). My son has this condition. The medications help, but the only permanent cure is PTE (Pulmonary Thromboendarterectomy) surgery, where they actually remove the old clots and scar tissue in the pulmonary arteries. My son had this surgery, and he was able to stop taking all three PH medication (Remodulin SQ, Adempas and Opsumit). It took a few months after surgery, but he was also able to discontinue his oxygen. The surgery reduced his pulmonary pressures from well over 100 to only 27.

      Before he had the surgery, his insurance company paid for the Remodulin (minus his out of pocket maximum, which was met the first month of the year). The insurance company refused to pay for the other two. His doctor’s PA helped him with the paperwork to get the drug companies to provide the other two with only a $15/month copay.

      BTW, if your wife’s doctor has decided for some reason that PTE isn’t an option, many patients have been greatly helped with the BPA (Balloon Pulmonary Angioplasty) procedure, where they thread a balloon into the pulmonary arteries to open up the clots to allow blood flow.

    • #32508
      Jen Cueva
      Keymaster

      Excellent information, @mamabear007. I know that Willian will appreciate it, too. Big hugs to you…

      I did ask if she was not a candidate for PTE surgery; I don’t think they have seen a PH specialist. Willian, what area are you in located in CA? UCSD has an excellent center for PTE, too.


      @colleensteele
      reached out to let tech know that you had posting ossies. Hopefully, that resolves for you.

    • #32511
      Colleen Steele
      Keymaster

      @williampatterson here are a few direct links to previous forum topics that discuss the medications you mentioned. Also, if you go to the top right below where you log out, there is a search engine. As you start to type in the name of the medications you will see a list of links you can click on for more information about these drugs. I hope this helps.

      Adempas:

      Do You Or Have You Taken Adempas?

      Adempas, anyone?

      Opsumit:

      Do You Have Experience Taking Opsumit ( Macitentan)?

    • #32516
      Jen Cueva
      Keymaster

      Hi @williampatterson, I hope that you have had time to look over the many resources that many have offered. I understand that this can take time, that is OK. Hopefully, you will hear back from the copay assistance funds soon.

      Tips from Colleen, @mamabear007, and @cdvol3gmail-com are something that others, too, may find helpful.

      Please know that we are here when you are ready to ask more questions or need support. Also, you shouldn’t have any other issues posting. So please reach out to Colleen or me if you have concerns or questions about that.

    • #32517
      V.R. Peterson
      Participant

      There you can find the financial help available at the link below. Some is provided by the pharmaceutical companies, and some of it is provided by charitable organizations.

      Help

    • #32567
      Jimi Mcintosh
      Participant

      Was on numerous drugs for PAH, until This past May 2021,when I received another diagnosis.  I had taken Adempas for about 5 years after using Traclear, Adcirca, new classes CB on BP meds. Now on a totally  different drug regiment, blood pressures is almost under control, they addded kidney failure, so dialysis 3 days per week. Life is not what I expected, but better than the alternatives.

      Your wife should do well on Adempas, it is less harmful than several of the other choices. As mentioned the manufactures are very helpdul

      in providing financial assistance, a few years ago, it was the major contributor to high BP, anxiety, depression, trying to figure out for these meds and they were higher than my monthly income.
      Furthermore, I feel that there is a treatment plan for PH, if not a cure.

      keep te faith and reach out if you need to find some financial assistance.

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